An Honor

I entered through the front door of the nursing home just after 8am. I then signed in at the front desk while shaking off the biting cold of that February morning in 1997. I was here to admit a new female patient, Rosa, to hospice.

I began my practice as a hospice RN in 1996. At that time the facility was seated in a pocket of the Midwest where “hospice” was not often spoken. I worked for a small hospice that had a census of eight (yes, you read that right-more staff than patients). I had already been a licensed nurse for fifteen years, but I was new to palliative end-of-life care. As a novice in hospice nursing I brought acquired skills in medical surgical, psychiatric,obstetrics, triage, and home health in addition to forty-seven years of invaluable life experience.

As a newly mentored hospice nurse I was hungry for information. I soaked up everything I read and heard in a sincere effort to insure a “good death” for my patients and families. I quickly learned that comfort was physical, emotional, and spiritual and that I would be providing comfort to the patient and family. In the case of Rosa, her family included what little family had survived her and extended to the staff and residents of this facility where she had resided for several years. This would be my “unit of care”.

This facility is a well known and respected long term care facility in the Midwest that, at best, tolerated the presence of hospice providing care to their residents. They perceived themselves as being “*THE Experts” *in providing care to their elderly residents until death and we were referred to as the *“Angels of Death*“. There didn’t seem to be enough boxes of doughnuts or cookies brought in by our agency to allow us to become part of their care team.

As I took the chart from the rack that morning I was told that Rosa “was easily agitated and had always been that way…it was just her personality”. I then slipped away to a corner behind the nurses station to gather clinical data from Rosa‘s chart.

Rosa, at over 100 years old, had a myriad of co-morbidities including a history of breast cancer that the family had not elected to treat. She was on several medications which included Tylenol for pain.

I entered her dimly lit room and saw a small woman lying in bed who appeared to be sleeping under layers of soft blankets. Within seconds she must’ve sensed my presence. Her beautiful searching dark eyes were fixed on me while she asked me who I was. As I turned to put my bag down I noticed a framed picture on her nightstand. The eyes looking back at me were the same eyes, but the face decades younger and breathtakingly beautiful. This was one of many pictures sitting around the room that would serve to help me piece together her story.

What I learned over time of Rosa’s story may seem irrelevant from a nursing perspective to some, but when providing comfort to Rosa at the end of her life the details were essential. Her life as an African American woman from the Midwest who became a famous Parisian fashion model in the early 1900’s was rich with stories of success as well as unspeakable tragedy. As she spent her last weeks and days reviewing her life to herself and to others she talked, yelled, laughed, and cried. I listened and learned as she celebrated and also grieved her life. No, she was not hallucinating as some commented. This was important work for her. I had the privilege of witnessing it while not doubting for a second that it was real. Sometimes she was a child talking to her mother. Other times a spoiled young wife demanding attention from her devoted husband. She was reviewing her life. This review was important. She was in a kind of labor many do at the end of life. I was there to listen and support her as best I could--providing comfort.

What was a priority for me that day was to begin my plan in getting her physically comfortable so that she could have some quality of life until her story here was over. In my physical assessment I tried to hide my horror as I looked at the the fungating tumor of her left breast. No one had prepared me for what I saw and smelled. I learned later that she had always been a “feisty woman“, but the agitation that was reported by staff had to be impacted by this growing cancer that was gnawing away at this once beautiful proud body.

The week before I had held an educational in-service at this facility on pain management emphasizing how untreated pain affects the patient emotionally, spiritually, and physically. The staff held onto their old beliefs about morphine--the *M WORD*. “Morphine hastened death” I obtained orders for a low dose of scheduled sub lingual Roxanol. The next day I found the patient asleep, more peaceful. The staff was not open to the possibility that she had been sleep deprived due to intractable pain and was getting much needed rest.

I was able to contact a niece, Millie, who met me the next day in the dining room. She helped me understand the stories. Rosa had told me about a fire, and her babies dying--she wasn’t hallucinating as others said. I never thought so. Rosa had also smiled with pride as she told me about the young black race car driver whose picture hung in Rosa’s room--Rosa’s late husband Martin. Millie told me about the impact the couple had made for Negro race car drivers in the early 1900’s. I asked what music she enjoyed. Soon Rosa was listening to recorded tapes of Mahalia Jackson singing gospel hymns while propped up on lavender bed pillows. She smiled and relaxed a little more as the spiritual balm soothed her.

When it seemed that Rosa had reached a level of physical comfort I obtained orders for a a 25 mcg Fentanyl Patch explaining to staff the ease of administration as well as its pain relieving properties. I also knew it would help insure her comfort because of its steady delivery and that doses would not be held because she was asleep and therefore “not in pain“. Over the next month the Fentanyl was increased to 50mcg. A bowel regimen had also been put in place effectively. I was also able to work with the staff in obtaining orders for wound care that diminished the musky sweet odor coming from her breast tumor keeping her worn satin gowns from being stained by the cancer that was bringing her closer to death each day. Vanity had been a part of her glamorous professional life and was no less important now.

I hope that at least one staff nurse in that facility was able to provide comfort to her next patient and the next using some of the tools I had been given and passed on during my care of Rosa. Coaching and teaching, I believe, is the essence of nursing.

Rosa died in less than a year after I joined her on the last weeks of her journey. She was 102. It seemed to be a “good death“. Rosa gave me much more than I gave to her. This was true with most of my hospice patients. Life is a gift. Live today--someday *is* today. Life is a journey full of good and bad. It begins and ends with a process both painful and beautiful. To have been a part of of this intimate time with Rosa was truly an honor.

What an amazing woman. This was a beautiful story and you are an excellent nurse. I admire hospice nurses so much. They were so sweet and understanding during my mother's last month. Thank you for sharing this.

Absolutely beautiful story. Thank you for sharing your courage and strength. In a busy stressful world it helps to remind each of us why we became nurses in the first place. She certainly had an angel on earth to have you as a nurse. Thank you again!

I think that too often we overlook what is important to the patient for their emotional and spiritual well being. I think it is so sad when my docs in the hospital write that the patient is hallucinating on my Hospice patients when they are doing a life review or seeing what we are unable to see. Great article, I have been in Hospice and Palliative Care for many years and we have difficulty also with SNFs accepting Hospice, most see it as a duplication of services as do many docs. God bless you in your continued work, you seem to be a genuine Hospice nurse.:redpinkhe